When an aspie says they don’t know what they’re feeling, it’s a literal statement. We aren’t trying to dodge the conversation. We aren’t withholding information. We aren’t being rude, mean, cold coy or vindictive.

I’ve had variations on the above conversation many times and it’s as frustrating for me as it is for the person who wants to know what’s wrong. The reason? I have difficulty identifying my emotions and even more trouble verbalizing them. Working through my emotional constellations has helped me identify some of the specific issues I–and many autistic people–have in processing and identifying feelings.

(Photo: Joe Shlabotnik / Creative Commons)

Predictably, I’ve grouped the issues into three general categories:

modulation (moderating the strength of my own emotions)

determination (identifying emotions in others)

discrimination (separating emotion directed at me from general expression of emotion)

Modulation: The Glitchy Volume Control

There is a common misconception that autistic people are unemotional. You’ll often hear this refuted by autistics themselves, who say they are too emotional. So which is it? For me, it’s both. My emotions gravitate toward the extremes of muted or intense; few emotional experiences fall in the midranges.

My default emotional state is neutral. I don’t feel especially good or bad. I’m present in the moment and content to be so. Externally, I may come across as serious or subdued, but reduced expressiveness shouldn’t be confused with a negative state of being or a lack of feeling.

The feelings are definitely there. Most of the time they quietly mind their own business and I need to consciously check-in to see what they’re up to. When they decide to fully surface on their own, however, they’re intense.

Unlike most neurotypicals, I don’t have a lot of ability to modulate the strength of my emotions. Imagine a radio with an on/off switch and a glitchy volume control.

If you think about this in terms of the weak executive function associated with Asperger’s, it makes sense. Humans use reasoning, rationalization and labeling to modulate emotion. All of these methods fall under the umbrella of executive function. Labeling emotions, in particular, seems to be hard for aspies.

Determination: The Broken Mirror

Just as I have difficulty labeling my own emotions, I have trouble identifying what others are feeling. I struggle with interpreting facial expressions and body language. I’m weak at perspective-taking. Basically, when it comes to reading emotional clues, I’m like one of those old-time detectives who had to solve murders without any forensic evidence. There’s only so much information you can gather from what people tell you outright.

This difficulty determining what others are feeling is a big contributor to the stereotype of the empathy-deficient aspie. If someone is giving off “I’m sad” cues that I fail to recognize, when I don’t console them, they’ll assume I’m cold and unsympathetic.

For neurotypical people, emotional interaction is like looking in a mirror. They expect to see a reflective emotion looking back at them and when they don’t, they assume the mirror is broken.

This isn’t to say I’m oblivious to other people’s emotional states. I get the obvious ones and the ones that I can derive from contextual clues. What I tend to miss are the subtle or unexpected emotional states.

Discrimination: Missing the Target

I’ve always been disturbed by confrontation and conflict, even when I’m only a bystander. By default, The Scientist is in charge of “confrontation with others.” If something needs to be argued over or complained about–a botched repair job or an over-cooked restaurant meal–that’s his department. While he’s making that phone call or waiting for the manager to appear, I go off and hide.

As an adult, I’m not proud of this. Why do I desperately need to flee a situation to which I’m nothing more than an observer?

Because, I recently realized, I don’t discriminate between anger that is aimed at me and anger in general. When someone is angry, I invariably feel like I’m the cause or the target, even when I rationally know that I’m not.

If The Scientist calls me after a bad day, I hear how upset he is and immediately feel distressed. Not distressed as in “I should console my husband because he’s had a bad day.” I feel distressed in a “this is incredibly stressful and I want it to stop” kind of way. My brain immediately goes into “fix it” mode, searching for a way to make the other person feel better so I can also relieve my own distress.

Of course, a conversation with an upset spouse is upsetting to most people. But what about a conversation between two strangers that I’ve merely overheard? Twice in the past two weeks I’ve witnessed one person berating another for an etiquette infraction at the swimming pool. (Yes, we take our lap swimming seriously around these parts.) Both times I felt my heartbeat skyrocket, as if the anger was directed at me. In reality, I’m sure neither of these people even noticed I was standing nearby.

Even now, as I’m sitting here in Starbucks typing, the woman at the next table is telling a story about how mad she is at her sister-in-law; I can feel my blood pressure rising at the tone of her words. Words that are completely irrelevant to me. Words that, thanks to my funky brain wiring, I find impossible to tune out.

Yes, not only does my autistic brain not know how to interpret the emotional content of other people’s conversations, it also refuses to tune them out. And people wonder why we aspies like to spend a lot of time alone.

It took me a long time and a lot of thought to figure out why I respond to secondhand distress like this. Why should I feel emotionally assailed when the angry words are aimed at another person?

In part it’s related to my upbringing, but there is also an element of weak executive control at work. In theory, I should be able to rationalize away my overreaction by telling myself that I’m observing generalized anger (or frustration or sadness), not anger directed at me. I should be able to put myself in the other person’s shoes and direct my emotions at the target of their distress, rather than feeling like the target myself.

Alexithymia

The three areas where I have difficulty–modulation, discrimination and determination–are actually core traits of alexithymia.

Alexithymia (literally: having no words for emotions) is impairment in identifying and describing emotions. Specifically, it’s characterized by:

When I look at the list of alexithymic characteristics, I also realize that when I’m emotionally uncomfortable, I’m more likely to have physical complaints. I’ll be feeling frustrated or sad, but complain that I’m uncomfortably cold or intolerably sleepy. This isn’t a connection I would make on my own, but once I see it described as part of alexithymia–like so much about my autistic self–it suddenly makes perfect sense.

There is a lot of overlap between alexithymia and ASD, both in the perception of emotions and the difficulty in verbalizing feelings. Not only are autistic people very likely to exhibit the characteristics of alexithymia, their parents are as well. However, many non-autistic people also have alexithymia, so it isn’t exclusive to ASD.

Alexithymia isn’t a clinical diagnosis like autism. It’s a construct (theory) used to describe the traits of people who have difficulty verbalizing emotions. It’s also a helpful way of thinking about some of the challenges that aspies have with processing feelings.

—–

More on Alexithymia and ASD:

Next Tuesday, we’ll be doing the Alexithymia Questionnaire for Take-a-Test Tuesday.

Thinking on Your Feet is a new test at Test My Brain. I was planning to do the creepy Face in the Branches test today but it’s no longer available. Instead I took Thinking on Your Feet, which isn’t an Asperger’s test but does test some of the cognitive areas that can be impacted by ASD.

Thinking on your Feet consists of three short tests:

Find the flickering dot: You’re shown a set of blue and yellow dots that flash intermittently and you have to find the dot that’s changing color. There are sixteen sets of dots.

Visual working memory: You’re briefly shown a set of four shapes arrayed around a plus (+) sign. The set disappears and one shape reappears. You press “s” if the shape is the same as the one you saw in that position in the set and “d” if it is different. There are 42 sets of shapes.

Visual reasoning: You’re shown a matrix of shapes and have to identify the “missing piece” from 5 possible choices. There are 35 matrices and they become increasingly difficult.

Example of a nonverbal reasoning matrix

As I was taking the tests, they reminded me of some of the cognitive tests I took during my Asperger’s evaluation.

The first and third tests measure components of executive function: attention and working memory. Executive function is way of describing our brain’s command and control center. It encompasses things like planning, problem solving, and verbal reasoning as well as starting, stopping, switching and monitoring tasks. Many aspies, including me, have impaired executive function.

The second test–visual reasoning–relies on nonverbal reasoning. Many aspies excel at tasks requiring nonverbal reasoning, either because they think visually or are skilled at pattern recognition.

Working with those general assumptions, individuals on the spectrum are probably more likely to score above average on the second test and average or below average on the other two.

Taking the Test

First a warning:One section of this test has a set of colored dots that flash at a steady rate. The flashing isn’t rapid, but the dots are quite bright and you have to study them as they flash to find one that is different. Is this sounds like it may be uncomfortable or triggering for you, don’t take this test.

The test guidelines say it takes about 30 minutes to complete. I finished in a little over 20. The first and third tests go pretty quickly, but you may want to spend more time on the visual reasoning section, depending on how quickly you can solve the harder puzzles and how much you care about your score.

When you’re ready to give it a try, go to the Test My Brain site and click the Go! button next to the Thinking on Your Feet test. You’ll be asked to agree to the consent form and provide some demographic information (age, handedness, primary language, etc.) to help the researchers analyze the data they’re collecting via these tests. It’s all anonymous and you won’t be asked for any personally identifying data.

Before each section of the test, you’ll be given written directions as well as two practice trials to be sure you understand what to do. After the three tests are complete, you’ll be asked for your SAT scores. If you don’t remember them or never took the SAT you can skip this section. It has no impact on the results you receive.

Scoring the Test

You’ll get three separate scores. Here are mine:

Find the Flickering Dot: I got 14.63, which is a measure of the average number of screen flashes it took me to find the dot. The average score on this test is 20.53.

I scored better than 30% of other test takers

Visual Reasoning Test: I got 31 out of 35 correct. The average score is 25.76

My visual reasoning score is in the 90th percentile group

Visual Working Memory: I got 37 out of 42 correct. The average score is 33.91.

My visual working memory score is better than 60% of the other test takers

If we assume that the scores are normally distributed, then scores that fall between the 25th and 75th percentile are in the average range of ability. Or to put it another way, if your blue guy is standing somewhere in the middle of the pack, your scores are average. If he’s standing in the first two or last positions, you’re above or below average.

For the flickering dot and visual working memory scores, my blue guy is standing in the middle six, which means I have average scores . On the visual reasoning test, my blue guy is in the second to last position, meaning I have an above average score.

I went back and looked at my ASD evaluation report to compare the results of the comparable cognitive tests with these and they’re quite similar. My scores were above average for perceptual reasoning and average for attention. I didn’t take a visual working memory test so I don’t have a direct comparison there. I did take two verbal working memory tests and my results were “impaired” on both, meaning my little blue guy was standing in the first position in line.

It’s no surprise to me that I scored better on visual working memory than verbal. My verbal cognitive test scores are poor across the board and I’m much more comfortable working from printed or visual material than from oral directions.

The Bottom Line

This set of tests is an interesting look at some of the cognitive elements that are thought to be ASD strengths and weaknesses.

Working my way through The Complete Guide to Asperger’s Syndrome, I found myself revisiting moments in my life that had been confusing, painful or traumatic. Suddenly, so much of my life made sense in the context of aspie traits.

When I got to Attwood’s description of the little aspie girl lining up her Barbie dolls and their clothes instead of playing with them, I literally shouted with joy. There are other people like me! I’m not defective. I’m not randomly weird. I’m an aspie. One of many.

I’d found my tribe and it was good.

This process of giving meaning to experiences is sometimes known as sensemaking or creating a sensemaking narrative. It happens when our current way of understanding ourselves or our situation is inadequate. Without the Asperger’s piece of the puzzle, I was forced to cobble together incomplete explanations for my developmental history and my life experiences.

Once I had a basic understanding of Asperger’s, I could apply that knowledge to “make sense of” my life in a new way.

Something is happening deep inside me, something unexpected and strange and fantastic. I’m not sure if I can describe in any sort of way that will make sense, but here goes.

*

Last night I had a dream. I was in a railway station, crossing the platform to the exit, when I came upon a woman and her pet goose. As I accidentally stepped between the woman and the goose, the goose nipped at my pants. Surprised, I yelped and flapped my hands.

*

Here’s the strange part: I haven’t flapped my hands since I was very young. From watching old home movies, I know that I flapped as a toddler and preschooler. I’m not sure when I lost my flap but my best guess is very early in elementary school.

Here’s the unexpected part: I’ve never consciously stimmed in a dream. I didn’t realize the lack of stimming in my dreams until I woke up this morning and was overpowered by the memory of my dream flapping.

Which brings me to the fantastic part: In the dream, in that moment when I flapped, I was flooded with the sensation of being connected to my original self.

*

Huh?

I know.

I don’t think there are words to describe that last part properly. It felt like a wormhole to the past opened up and for the briefest moment I was able to experience my self as a very young child. Not imagine or remember, but actually experience it.

It was unlike anything I have ever felt, imagined, or experienced as an adult. I can’t even say that I clearly remembering feeling that way as a child.

Perhaps it has nothing to do with childhood. Perhaps the concept of original self transcends age and hinges instead on access.

I don’t know and I don’t really care. I have to give it a name so I can tell you about it, but in my mind, it doesn’t need a name. It is a state of being, as clear as any I’ve ever experienced.

It felt like untainted joy and freedom. It felt infinite. It felt like I was connected to the absolute most original version of my existence.

I can’t explain how I know that, but I do.

And it was so strongly tied to that flap–that startled, instinctive response provoked by the angry little dream goose.

*

But it was a dream, right? Dreams trick us into thinking all sorts of strange things.

Perhaps.

But dreams also tap into our subconscious in ways that we can’t access when our waking defenses are active.

*

All morning I’ve been thinking about why this happened. Why now?

What I’d like to think is this: I’m slowly rediscovering my original self.

Part of that rediscovery is tuning in to my urge to stim and setting it free. Too many years of reflexively quieting my body, of squeezing my stims down to their least noticeable versions, has disconnected me from myself in an essential way.

Slowly, slowly, the stims of my childhood are coming back. Last night as I was waiting for the pasta to cook, I found myself twirling in the kitchen and instead of stopping, I let myself enjoy it. I kicked out my foot and make a full spin to the right, then kicked out my other foot and twirled to the left. I did it again and again and soon I found myself laughing out loud.

Twirling around in the kitchen feels good. It feels right.

*

As I unlearn my habit of minimizing my stims, I feel like I’m reintegrating parts of myself that have been disconnected for a very long time.

And I find myself wondering if acceptance comes not from learning to accept but from unlearning a lifetime of rejecting.

This week I took the Empathy Quotient (EQ) test. I know many of you have been waiting for this one. Next week we’ll do something less technical and more fun, but this week, I’m gonna hit you with a lot of background info. The EQ and the 2004 study that it was originally used in created a firestorm of controversy that never really died down.

The Empathy Quotient (EQ) test is intended to be a measure of your ability to understand how people feel and to respond appropriately. The questions on the EQ are based on the following definition of empathy:

“Empathy is the drive or ability to attribute mental states to another person/animal, and entails an appropriate affective response in the observer to the other person’s mental state.” (Baron-Cohen and Wheelwright, 2004)

This definition encompasses both cognitive empathy (perspective taking/attribution) and affective empathy (emotional response to another’s emotional state). Although many autistic people have described distinct variations in their perceived levels of cognitive and empathic empathy, Baron-Cohen and Wheelwright state that cognitive and affective empathy are too difficult to untangle and therefore must be looked at as a whole.

A subsequent 2005 study by Muncer and Ling challenged this belief by sorting 23 of the 40 EQ questions into three domains: cognitive, emotional reactivity, and social skills. To give you an idea of what types of skills fall into each domain, here are the top 5 most relevant questions for each:

Cognitive

I can tune into how someone else feels rapidly and intuitively

I am good at predicting how someone will feel

I am quick to spot when someone in a group is feeling awkward or uncomfortable

I can easily work out what another person might want to talk about

I can sense if I am intruding, even if the other person does not tell me

Social skills

I do not tend to find social situations confusing

I find it hard to know what to do in a social situation

I often find it difficult to judge if something is rude or polite

I find it difficult to explain to others things that I understand easily, when they do not understand it first time

Friendships and relationships are just too difficult, so I tend not to bother with them

Emotional reactivity

I tend to get emotionally involved with a friend’s problems

Seeing people cry does not really upset me

I really enjoy caring for other people

I usually stay emotionally detached when watching a film

If I say something that someone else is offended by, I think that is their problem, not mine

The 2005 study tested the 23 domain-specific EQ questions for gender differences. The emotional reactivity domain had the greatest gender differences, the cognitive domain had fewer differences and the social skills domain showed no differences in scores along gender lines. The authors theorized that emotional reactivity may be strongly rooted in the “willingness of an individual to express emotion” (drive) rather than the ability to understand another person’s emotional state.

This raises the question of how alexithymia (emotional dysfunction), which affects many people on the spectrum, might impact EQ scores. Many people on the spectrum experience alexithymia, making them less willing or able to express emotion due to challenges in regulating and processing feelings. Perhaps it isn’t that autistic people can’t understand the emotions of others, but that the cost of responding appropriately is too high.

Gender Bias Revisited

If you’ve been following Take-a-Test Tuesday closely, you’ve seen the discussion of gender bias in other screening instrument studies. The EQ study was heavily weighted toward males, with 65 males and 25 females in each group. That’s more than twice as many males as females in a study of a trait that is known to have gender differences in scoring.

Traditionally males score significantly lower than females on self-reported measures of empathy. On top of that, the EQ study had significantly more control group women than men with above average scores (>54) and 14% of control group males in the EQ study scored in the AS/HFA range.

whether the EQ is inversely correlated with the AQ (i.e. the “more autistic” you are, the “less empathetic” you are)

whether the EQ inversely correlates with the Friendship Questionnaire (i.e. the “more autistic” you are, the less reciprocity and intimacy you’ll report having in relationships)

for sex differences in empathy

Baron-Cohen used the low EQ scores of the HFA/AS group as support for his theory that HFA/AS is an “empathy disorder.” The researchers subsequently conducted interviews with many of the HFA/AS study participants and reported that while they had difficulty knowing that their actions hurt another person, they did feel bad about it when such instances were pointed out to them, and therefore “are not like unfeeling psychopaths.” (As I write this, I’m envisioning the tops of my autistic readers’ heads flying off. Repeatedly. Sorry.)

This study is also used as evidence to uphold another of Baron-Cohen’s theories (extreme male brain theory), further calling the motivation of the study design into question.

So, now that we’ve gotten ourselves all worked up about the questionable science underlying the EQ, let’s actually take the darn thing.

Probably longer than it needs to be (a 15-item version has shown similar outcomes)

Self-reported measures of empathy often have poor correlation with tests of empathic accuracy (i.e. we tend to think we’re either more or less empathetic than we are)

Taking the Test

When you take the EQ, you may question the relevance of some of the items. That’s because 40 are related to empathy and 20 are filler questions meant to be a distraction from the repetitive nature of the empathy questions. Only the 40 empathy-related questions count in the scoring; the 20 filler questions score a zero no matter how you answer them.

You can take the test here. There are 60 questions. Unlike some of the other tests we’ve taken, this test gives 2 points for a “definitely” answer and 1 point for a “slightly” answer so degree matters.

Scoring the Test

Possible scores range from 0 to 80. The average NT scores from two different studies were 47 and 50 for women and 41 and 42 for men. The average aspie score is 20.

A general scoring guideline:

0-32 = below average

33-52 = average

53-63 = above average

64-80 = significantly above average

I got a 12. The Scientist got a 48. I’ve taken the EQ twice in the past, and got an 8 and a 10. I jokingly told The Scientist this past week that I’m now 50% more empathetic.

If you get a ridiculously low score on this test, keep in mind that it’s measuring a few different things and conflating them into one “empathy” score, which isn’t very accurate. After reading the Muncer study, I wish the test returned subscale scores for cognitive, emotional reactivity and social skills. I’d like to know which of the areas I actually scored some points in.

The Bottom Line

The evidence for the EQ as a unidimensional measure of empathy is weak. Aspies tend to score low on the EQ, but what that means is unclear.

In the past couple of weeks, I’ve been tagged with two blogging awards: the Liebster and the Reality Blogging award. I’m going to do the Liebster today and the Reality award next week because some of the people I want to tag for the Reality award just got tagged for a Liebster and I don’t want to overwhelm anyone.

Alyssa from Yes, That Too tagged me for the Liebster. She writes smart, insightful and sometimes angry things about autism and being autistic and advocacy. Sometimes she writes Chinese language posts that I can’t read but like to look at nonetheless. Go see what she’s up to, if you haven’t already.

The Liebster Award rules are:

1. Give 11 random facts about me.
2. Answer the 11 questions that Yes, That Too gave me.
3. Make 11 new questions for the people I tag to answer.
4. Tag 11 blogs that are new or have less than 200 followers.

Facts about me:

I’m allergic to dogs but I have one anyhow.

I love roller coasters. When I was a kid and there was a school trip to an amusement park, I used to spend all day going on the roller coasters.

I have a 5th degree black belt in taekwondo.

When I was in third grade, I was the kid whose two strides most closely measured a yard so I got to go outside and walk around the building to measure its circumference. I think there was a math lesson involved but all I remember is being absurdly proud of my prowess as a human yardstick.

Right now, I’ll only write with a Pilot G-2 pen. I have a box each of blue, black and red.

I eschew the Oxford comma.

I can comfortably swim a mile without stopping.

11 Answers:

How old are you? 43

Why did you start blogging? To try to understand autism and specifically my autistic experience better. Blogging is taking me to all sorts of unexpected places.

What is the most frustrating song you have ever had stuck in your head? The Oscar Meyer Weiner song. It happens a lot when I run, because it’s the perfect running rhythm for me. Also, I once spent an entire 6-mile run with Bruno Mars’ “Lazy Song” playing in my head on repeat. That was torture and made no sense.

Do you have a useless talent? (If so, what?) I can break boards with my hands and feet.

What is something that happened to you where people responded with “Only you could…” I broke my nose falling into a trash can. It sounds like something that would happen to a sitcom character but it required internal and external stitches to fix so it sounds funnier than it was.

Have you read Loud Hands yet? (And if you haven’t, WHY NOT?) It’s on my list of books to buy and read! I’m currently reading Ask and Tell, which is excellent. I’m going to add it to my blog’s resource page when I finish it. The I’m going to get a copy of Loud Hands.

Do you take things literally? Yes, all the time and it can be frustrating and embarrassing.

What is the most hilarious rumor that has been spread about you (that you know of and are willing to share?) I don’t think I’m socially well-connected enough to (a) have rumors spread about me and/or (b) know about them.

Do you know any other languages? (Which ones? How proficient?) Yes, 4, which is weird because I have no natural aptitude for learning foreign languages. Other than English I learned French all through high school and was able to read novels and watch movies in French back then but I’m not that proficient any more. I took one semester each of Latin and Spanish so I have rudimentary skills in both. I know enough Korean to follow dinner table conversation, order a beer and know if the people on the bus are talking about me.

If money were no object, where would you travel? I’d spend a few months traveling across Europe by train.

If money were no object (and hence you could hire people/lobby/etc) what change would you try to make in the world? If money were literally no object I would eliminate poverty, though I don’t think that can be done with money alone, so honestly I’m not sure.

11 Questions:

What book are you currently reading?

What hobby or interest would people who don’t know you well be surprised to learn you have?

Coffee, tea or something else?

If you could have a superpower, what would it be?

What’s your go-to activity for entertaining out-of-town guests?

If you could have any sort of animal for a pet, what would it be? (assume anything is possible, like if you want a pet giraffe, your neighbors won’t mind a bit)

Do you have any phobias?

When did you start writing?

Which Halloween candy did you eat first and which did you always give/throw away?

How far away from your place of birth do you currently live?

If someone is only going to read one thing on your blog, what would you like it to be?

11 Bloggers I’m Tagging:

(If you’re on the list and don’t fit the rule criteria, well, screw the rules. I’ve never been good at following them anyhow.)

Paths to Realization

As an adult, there are a few common ways that you might realize you’re on the spectrum:

your child is diagnosed with ASD and in the process of learning more about autism, you recognize autistic traits in yourself

someone in your life reads or hears about Asperger’s or autism and tells you that they see a lot of ASD traits in you

you hear or read about Asperger’s or autism in the media and recognize yourself in the description of ASD traits

you take one of the online ASD tests and get a result that says you are “likely an aspie” or “likely autistic”

Your reaction to this first contact with Asperger’s or autism might be “I kind of knew that” or it might be “bullshit!”

For many years, I dismissed my AQ scores. I was convinced that everyone who took the test got a score that said they were likely autistic. Wouldn’t everyone answer the way I did if they were being honest? Completely irrational, yes, but I wasn’t ready to accept what was staring me in the face.

Then came the Finch story on NPR. When it was over, I Googled “Asperger’s tests” and came upon the Aspie Quiz. My score was way above the cutoff for Asperger’s. I took it again, answering more conservatively. Still above the cutoff.

I sat there at my desk for long minutes. Could it be possible that I’ve been autistic all my life and not known it? That’s a stunning realization–one that would require me to reframe everything I thought I knew about myself and everything I’d assumed I knew about autism.

I’ve always known that I’m different. I’ve been labeled shy, weird, introverted, geeky. But what if I wasn’t just weird? What if this thing called Asperger’s explained everything about me that was different?

That was an exciting thought. If it was true, it gave me a whole new way of thinking about my life.

Embracing Your Realization

Relax. Breathe.

Take some time to think about what being on the spectrum might mean to you.

Retake the AQ or Aspie Quiz as many times as you need to.

Make a list of traits that you see in yourself, including specific examples if you find it helpful.

Reassure yourself that you aren’t making this up.

Is This Me?

I didn’t do anything with my realization right away. It was a lot to process. I kept coming back to the possibility that I was imagining it.

Late the next day, during a long drive home with The Scientist, I brought up my suspicion that I might be an aspie. His reaction was guarded. He listened, agreed with much of what I said, then reassured me that he loves me exactly the way I am. It was a good discussion, but he didn’t sound convinced. I needed more data to back up my hypothesis.

Back at home that night, I showed him some things online, including Rudy Simone’s list of Female Asperger Syndrome Traits. He read through the list, nodding at many of the traits, just as I had, looking a little more convinced of my hypothesis with each “hit.”

In the days that followed, I searched the internet for more information about Asperger’s and found frustratingly little that applied to adults. I felt like I needed a more comprehensive resource, something that would give me a better picture of Asperger’s than the sometimes conflicting bits and pieces I was collecting online. (Sadly I hadn’t yet discovered autistic bloggers.)

Determined to find information about Asperger’s in adults, I scoured the reviews at Amazon.com and settled on The Complete Guide to Asperger’s Syndrome. Having now read a good portion of the books available on ASD, this is the still one book I’d recommend if you’re looking for an accessible, reasonably comprehensive starting place.

Diving into the book immediately after it arrived on my doorstep, I spent hours underlining and annotating it. I read passages aloud to The Scientist. I made notes and looked up things like executive function and special interests online. Most of all, I just kept saying to myself, “This is me. I’m an aspie.”

By lack, I don’t mean a complete absence of empathy; I have an empathy deficiency. If most adults are “doing empathy” at the calculus level, I’m still in Algebra II and solving for X in ways that would make your head spin.

Before I discovered the online autism community, I assumed that my impaired empathy was typical for someone with Asperger’s. Much of the published literature includes impaired empathy as a common AS trait. “Lack of social or emotional reciprocity” is one of the diagnostic criteria. My own experience didn’t disprove that.

Then I discovered the online ASD community and suddenly felt like I needed to hide my struggles with empathy. Everywhere I looked people were refuting the notion that autistics lack empathy.

Again and again I’ve encountered discussions about empathy online and quietly slunk away, feeling like there was something wrong with me–like I was a “defective” autistic.

I Googled empathy–probably one too many times. I read the long list of definitions at Wikipedia . I read Simon Baron-Cohen’s writing on the subject and felt the same anger others have expressed at his biases. I read looooong threads on Wrong Planet and Facebook. I revisited the diagnostic criteria. I combed through the #actuallyautistic tag on Tumblr.

The more I read, the more confused I became. I started to wonder if I was talking about the same thing others were talking about when I use the word empathy.

So let’s talk about that. What is empathy, exactly? What are we talking about when we talk about empathy?

Sympathy vs. Empathy

Empathy, in the most basic sense, is the ability to understand and share an emotional state with another person.

As an adult with a good amount of life experience, I can often understand the emotional state of another person. I know that if someone’s dog has died, they’ll feel sad. Most people probably come to this conclusion in a more instinctive way than I do, but I get there all the same.

Depending on the situation, I may share an emotional state with another person to some degree. I know how I felt when my dog died. Logically I know that the other person feels very sad. If I knew the person’s dog, I’ll feel a sense of loss myself, and that will contribute to my sharing their emotional state. However, I rarely experience a strong emotional reaction to another person’s circumstances.

That’s not to say that I don’t experience concern toward other people. Simple concern for others, though, isn’t so much empathy as sympathy. Sympathy is a concern for the wellbeing of another person. It can exist in the absence of the empathic act of sharing an emotional state with that person. It often arises from empathy, but it doesn’t have to.

When my daughter says she’s had a bad day at work, even though I find it hard to share her emotional state, I sympathize with her frustration or sadness. I don’t know what it feels like to get a phone call from a suddenly homeless student. I can’t truly share what my daughter is feeling as she tells me about the experience. But I do worry about her ability to cope with the situation. I understand how important her work with is to her. I hear the distress in her voice and want to do what I can to offer comfort.

In this type of situation, I have a great deal of sympathy, regardless of how strongly rooted in empathy my concern is. My sympathy doesn’t always come across like a neurotypical person’s sympathy would–okay, it rarely does–but it exists just the same.

The Challenges of Perspective Taking

The examples I used above are fairly explicit in terms of the emotional content of the situation. Both a dead dog or a student who’s been kicked out of her home have obvious contextual clues to the emotions that are present. Even my rudimentary empathic radar is going to pick them up.

Where I struggle most is in subtle situations. I often say things that other people consider insensitive and then I completely miss their wounded reaction to my comment. Why? Because I didn’t know that my comment was insensitive in the first place and I have trouble reading nonverbal communication.

Think about it. If you didn’t know someone’s dog had died, would you find it easy to understand and share their emotional state? Probably not. You’d pick up that something was wrong, but you wouldn’t be able to truly comprehend how they felt until they explained the source of their distress.

For me, all the little things that people communicate nonverbally or hint at or imply are like a whole bunch of secretly dead dogs. Until some says, “your comment hurt my feelings because ________” all I have is a vague feeling that something is off. Maybe not even that.

This is why I “failed” the Sally-Anne test. Twice. I failed it when I first discovered it early in my reading about Asperger’s and then I failed it again a few weeks ago, because it was presented in a slightly different format. Yep, twice.

You can argue that the Sally-Anne test has little to do with empathy. It’s true, the Sally-Anne test doesn’t predict the emotional dimension of empathy. Taking the test doesn’t require you to share an emotional state with Sally. It does, however, require you to set aside your own knowledge of the situation and take Sally’s perspective.

This is where a more precise definition of empathy comes in handy. Empathy actually has two components: cognitive (perspective taking) and affective (emotional response to another’s emotional state). The Sally-Anne test is a test of cognitive empathy, which is impaired in people with Asperger’s. However, when it comes to affective empathy, according to a 2007 study* aspies are on par with neurotypicals.

So. Affective empathy? We have it. Cognitive empathy? Not so much.

This is why I can fail a simple test twice, even when I already know the “answer.” I automatically default to my own perspective. I can take another person’s perspective, but it often requires a conscious decision on my part to do so. This seems to be something that’s silently implied in the general, vague, oft-used notion of empathy: that one can spontaneously and instinctively understand and share an emotional state with another.

When I say I have an empathy deficiency, I mean that I struggle with taking the view of another person spontaneously and instinctively. I lack cognitive empathy.

Too Much Empathy?

Over and over again I see references to autistic people having too much empathy. While I think the people using this phrase mean well, I’m not sure it’s accurate. Is an autistic person who feels overwhelmed by an emotional situation truly sharing and understanding the emotional state of another person too much or are they overwhelmed by an inability to regulate their own reaction to a highly-charged situation?

Generally, when I feel emotionally overwhelmed by another person’s emotions, it’s related to my alexithymia (emotional dysfunction). In short, I have trouble regulating my own emotions and I have trouble discriminating between emotions that are “aimed at” me and emotions that are “aimed at” someone else. If I encounter two people having a shouting argument, my emotional reaction is the same as if I were the target of their shouting, as if they were both angry at me.

I don’t think this is empathy. I’m not sharing their emotional state (anger) so much as feeling like the target of it. If I were sharing the emotional state of the people in the shouting match, wouldn’t I feel like shouting at someone, too? Instead, I feel frightened and intimidated. I feel an intense need to escape from a situation to which I’m nothing more than a bystander.

In fact, in this kind of situation, the only person I’m thinking about is myself and how uncomfortable I am. There I go again, taking my own perspective. My distress at the situation might outwardly appear to be empathic but my internal reaction is a great big “MAKE IT STOP, NOW.”

This type of reaction is mentioned in the 2007 study I referenced earlier. The researchers found that the aspies scored significantly higher on a scale of personal distress than the neurotypical group, indicating “a greater tendency to have self-oriented feelings of anxiety and discomfort in response to tense interpersonal settings.” Note the use of self-oriented feelings in that sentence. Empathy by definition describes a state shared with others; an overabundance of self-directed anxiety or discomfort is not the same as “too much empathy.”

The Right Way to be Autistic

Circling back to what got me started on this post: the subtle implication in the discussion about empathy that there is a right way to be autistic and that right way includes having empathy or too much empathy. And perhaps as a corollary to that: autistics who have too much empathy are doing their part to subvert the stereotype of the unfeeling autistic.

That was probably an unpopular paragraph. If you found it offensive or upsetting, take a moment to stop and think about why.

Is there any difference between the subtle pressure to (appear to) have empathy and the subtle (or not so subtle) pressure to not stim in public or to make eye contact? Is advancing the belief that all autistics have empathy another way of making us seem more normal? Is there a difference between pressure to not look different outwardly and the same sort of pressure to not feel different inwardly?

Empathy is often philosophically framed as a fundamental element of the human condition. Without it, are we somehow less than human? What if we have impaired empathy–is our humanity impaired?

Choose Your Words

Perhaps we need to be more thoughtful about how we use the word empathy.

Empathy is not interchangeable with sympathy.

Empathy is not interchangeable with emotion.

Empathy is not interchangeable with emotional overload.

Empathy is not some hoop to be jumped through to prove to the world that we may be autistic, but it’s not that bad because “oh look, we have empathy just like you!” (Even if we do, in whatever form. There should be no burden of proof.)

Empathy has many definitions, but they all have at their core understanding the emotional state of another person.

When I say I lack empathy, what I mean is I have a deficit in understanding the emotional states of others. Hell, I have a deficit in understanding my own emotional state at times.

“I lack empathy” simply means that “I have a deficit in understanding the emotional states of others.”

This doesn’t mean I’m unsympathetic.

It doesn’t mean I don’t care for others.

It doesn’t mean I can’t show concern.

It doesn’t mean I have no emotions.

It doesn’t mean I don’t get overwhelmed by other people’s emotional states.

It doesn’t mean I’m any less human than you are.

What does it mean then?

That I may need more information than a typical person to understand a social situation. That my reactions to your emotions may be unconventional. That I have to work harder to grasp what comes naturally to most people.

Simple as that. Nothing more, nothing less.

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*Thank you to Pi for pointing me toward this study. It turned out to be the missing link in wrapping this post up.

This week for Take-a-Test Tuesday, I took the Broad Autism Phenotype Questionnaire.The only online version I was able to locate is seriously flawed so I’m going to recommend against taking it. However, I’ve been looking for an excuse to talk about the Broad Autism Phenotype and here it is! If you’re the parent of an autistic child, I have a question for you about the BAP at the end.

The Broad Autism Phenotype (BAP) is a fancy way of saying that nonautistic relatives of autistic individuals often have subclinical autistic traits themselves. As far back as Leo Kanner’s original study on autism, researchers have been observing a tendency for parents of autistic children to exhibit traits that are milder but qualitatively similar to the defining characteristics of autism, especially in the area of social communication.

Consequently, the Broad Autism Phenotype Questionnaire (BAPQ) focuses primarily on social communication, rigid personality traits and pragmatic language deﬁcits, which are thought to be the most common characteristics of BAP. It is designed to be taken by nonautistic individuals, specifically parents of autistic children.

The BAPQ has questions in three areas:

social communication deﬁcits (aloof personality subscale)

stereotyped-repetitive behaviors (rigid personality subscale)

social language deﬁcits (pragmatic language subscale)

Each of these areas corresponds to one of the core domains of autism (though that will change with the DSM-V): social, stereotyped-repetitive, and communication deﬁcits. The researchers who developed the BAPQ defined the three subscales that the test measures as follows:

Aloof personality: a lack of interest in or enjoyment of social interactionRigid personality: little interest in change or difficulty adjusting to changePragmatic language problems: deﬁcits in the social aspects of language, resulting in
difficulties communicating effectively or in holding a ﬂuid, reciprocal conversation

In developing the BAPQ, traits like anxious/worrying,hypersensitive to criticism, and untactful (which can all be autistic traits) were omitted because the researchers believed they were observed less frequently as part of the BAP. An individual is considered to “have” BAP if they exceed the threshold score on two of the three subscales.

It’s interesting to note that parents, grandparents, aunts and uncles of autistic children also have higher than average rates of major depression and social phobia. A number of studies (like this one) have indicated no direct relationship between BAP and major depression or social phobia in autism families. There have also been a number of studies that have refuted the notion that raising an autistic child is the cause of these elevated rates (take a look at the discussion section of the linked to study if you’re curious about how they reached this conclusion and what other factors might be at work).

Taking the Test

The only place I could find to take this online is at OKCupid. The test is riddled with grammatical errors and the result summaries are downright insulting. The scoring also appears flawed, so unless you have literally nothing better to do, I don’t recommend taking it. Seriously, go see what’s new on Tumblr or something.

My primary purpose in analyzing the online test is to point out how flawed it is and how it doesn’t align with the intended scoring method of the original BAPQ. You might want to go through the test to see what questions are included but you can also find the questions on page 10-11 of this PDF.

Scoring the Test

It’s unclear how the online test is scored. The original BAPQ has 6 answer choices, scored on a scale from 1-6, but the online test collapses the first and last two choices. The BAPQ cutoff scores are averages (2.75 – 3.5), which were developed as part of a study using the 1 to 6 scale. The OK Cupid test appears to be using a summed score rather than an averaged score to determine a cutoff, so maybe the person who posted this decided to make up their own cutoff?

Like I said, you’d be better off wasting fifteen minutes on Tumblr.

At any rate, it provides four scores: diagnosis (overall score), aloof (aloof personality traits), rigid (rigid personality traits) and pragmatic (pragmatic language problems). The fact that the scores are presented as percentages (in excess of 100, no less!) makes no sense. Even worse is the little “diagnostic” description provided.

Mine says: “You scored 123 aloof, 117 rigid and 100 pragmatic. You scored above the cutoff on all three scales. Clearly, you are either autistic or on the broader autistic phenotype. You probably are not very social, and when you do interact with others, you come off as strange or rude without meaning to. You probably also like things to be familiar and predictable and don’t like changes, especially unexpected ones.”

Yep, that’s me, 123% aloof and 117% rigid.

I looked at all of the possible outcome descriptions (you can force the test to reveal them at the end even if they don’t pertain to your score) and they’re all just as meaningless. Some are downright wrong. Many of them state that you’re on the BAP if you are over the cutoff on one subscale but not the other two, which is incorrect.

The Bottom Line

The online version of the test is too flawed to provide meaningful results. The BAPQ as administered in a clinical setting is used to screen for BAP in parents of autistic children, but the goal of screening is unclear.

My question for any parents of autistic children who might want to answer: do you see aspects of yourself in the BAP questions? Do you think the BAP has any significance for you personally?

Take-a-Test Tuesday has led to some readers realizing that they too might be on the autism spectrum. Their comments nudged me to start writing about a subject I’ve been meaning to tackle: my Asperger’s “origin story” or how I came to realize that I might be autistic and what happened in the wake of that realization.

As usual, I’m mixing personal narrative with a bit of advice based on what I learned from my experience. I hope that other Autistics and those who think they might be on the spectrum will add to what I have to say here by sharing their own experiences in the comments.

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So, you think you might be an aspie or autistic or somewhere on the autism spectrum. Now what?

First, take a deep breath. Relax. Nothing’s changed. You’re the same person you were before you took that test, read that article or had a lightbulb go off while talking to someone about autism.

I remember my first inklings that I might be an aspie. I was listening to an NPR story about David Finch, the author of The Journal of Best Practices. His first hint that he had Asperger’s was an online quiz that his wife asked him to take because she recognized so many aspie traits in him.

As they described the quiz questions, for the first time I realized that Asperger’s Syndrome is more than social awkwardness and that I’m more than painfully shy. The symptoms that stood out most for me were the ones I’d never known were “symptoms” of anything other than my personality: attachment to routine, resistance to change, special interests, a need to be alone. Down the list I went, nodding and thinking yes, yes, yes, ohmygoshyes.

I went in search of the Aspie Quiz and what really blew me away were the specific behavioral questions: Have you been accused of staring? Yes! Do you tend to talk too loudly or too softly? Yes! Do you have difficulty filtering out background noise? Yes!

How had I not seen this before?

I’d heard a similar interview with Finch back in 2009. Interesting, I’d thought at the time, but nothing more. I’d read quite a bit about autism, because I was drawn to the subject. It never occurred to me to ask why. I’d taken the Autism Spectrum Quotient AQ test several times in the past. Every single time I scored above the cutoff for being on the spectrum. Every single time I told myself that it was probably a fluke, or even more improbably, that most people likely scored that high.

For years I’d tiptoed around the subject of autism. Finally, at 42, I was ready to explore the possibility that I was autistic.Processing your First Contact with Asperger’s or Autism

Nothing has changed; everything has changed.

Know that no matter how it feels right now, this can be a positive realization.

If you’re on the spectrum, learning more about what that means can help you understand yourself better and learn to cope more effectively with the challenges that an Autism Spectrum Disorder (ASD) presents.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.